When I got up this morning, trending on my Twitter feed was the news that the WWE (World Wrestling Entertainment) superstar, Roman Reigns (real name Joe Anoa’i), was in remission from leukaemia. In was in October 2018, in front of a packed arena, holding the Universal Championship belt, that he told the world that he needed to take time away to face the disease.
Just five months later he’s back and we should be celebrating this. But some people aren’t. Some wrestling fans think this is a work. Just to bring you inside the business a little, a work is an act that manipulates an audience in order to elicit a desired response. This is not a work. And my first feeling toward the people who were saying this was to scoop them up, slam them down on the canvas and cover them for the 1-2-3.
But I won’t. You see, there’s a fundamental flaw in all of this, Roman’s remission appears to be too good to be true. Looking great with all of his hair, five months after diagnosis doesn’t fit in with the traditional narrative of a blood cancer patient. Cancer doesn’t work like that, does it?
Actually, yes, some blood cancers do. I’ve had a similar type of blood cancer to Roman called chronic myeloid leukaemia (CML) for 11 years now. I take a small white tablet every morning called a tyrosine kinase inhibitor (TKI) and it puts my leukaemia back in its box on a molecular level. I’ve had bad days where I’ve felt tired or a bit sick but I’ve carried on. I work full time in education and haven’t taken a day off sick through anything related to the leukaemia. It took me about 9 months to reach a haematological level of remission, in that my blood looked OK. It took 6 years to get to a molecular level of remission and now my leukaemia is pretty much undetectable. I’ve never lost my hair and I’ve never had traditional chemotherapy.
You see where I’m going with this? Roman is an elite athlete and it might surprise you that I’m not. We’ve both fought our leukaemia in our own way and in our own timeframe. But there is one thing that I guarantee will annoy any leukaemia patient who is in remission, that’s someone saying, “well, you don’t look sick!” Right now, that’s happening online. Can’t we celebrate Roman looking great and happy or would we prefer him hooked up to a drip, pushed out in a wheelchair? That’s our traditional view and if our traditional view has been upended, it isn’t a lie.
The treatment that has given Roman and me our lives back was hailed in 2001 by Time Magazine as the magic bullet for cancer. Times are changing, we’re the trailblazers and millions of people are now living because of that little white tablet. They aren’t having devastating does of chemotherapy and in most cases, after taking the tablet they are able to go to work or smash someone around in a wrestling ring. It’s still not perfect, some people get side effects from the drugs but as the treatment improves, so will the quality of life.
We’re winning this battle and if we can win this one, we can win other battles against cancer. So take the time out to celebrate this, think of a world where we could treat cancer with a tablet; isn’t that what we’ve been wishing for? I’m living proof. Roman Reigns is living proof and so are millions of patients across the world.
But, let’s not forget, and Roman knows this all too well, leukaemia can relapse. We’re all living on a knife edge from appointment to appointment. My appointments are six months apart and I still get nervous, I’m sure that I always will. It’s a strange way to live…but it’s better than the alternative.
If Roman wants to make an even bigger difference he’ll tell his story. He’ll educate people, in detail, on the journey that he’s been through and he’ll tell them why, after five months of being diagnosed with blood cancer, he looks fantastic. Give people even more hope and help them understand that whilst we are a long way from winning the war, we are fighting back.
Please share this, it’s a great opportunity to educate people on blood cancer which is the third biggest cancer killer behind lung and bowel cancer in the UK.
I suppose that I should have written this before I hit the target but it felt a little presumptuous.
I now struggle to find the words to convey the joy and relief I feel in hitting the £10,000 #Kris10 target for Leukaemia Care this morning. Thank you is a good start.
It’s taken nearly 11 months and it’s been really, really difficult. The walk and the recent Big Finish auction pushed us hard towards the line but there have been plenty of moment where I felt that I’d bitten off more than I can chew. It’s hard not to take things personally especially when the cause is something so personal. I’ve developed some thicker skin and a newfound appreciation for professional fundraisers. In fact, I just don’t know how they do it, it’s an incredible skill.
Nearly 11 years ago I was diagnosed with leukaemia but you know that story. The story now is about supporting people who are diagnosed with a blood cancer today, tomorrow, next week… Treatment options are improving and we’re making inroads into earlier diagnosis. There is a huge psychological impact on the patient after diagnosis and the emotional impact leaves lots of damage. Leukaemia Care do an incredible job supporting patients and families with the seismic shift a diagnosis brings and this money will make a difference.
Is there a better Christmas gift? We’ll save lives with this and given that you are reading this you are likely to have been part of this story and I genuinely can’t thank you enough for your support.
There’s always a long way to go; work like this will never end and our relentless commitment to making people’s lives better is worth it.
So, take the baton, run a marathon, jump out of a plane, fly down a zip wire or sit in a bath of beans. Go and write your own story. I’m done for now. It’s nap time. Happy Christmas.
A picturesque canal walk set to raise funds for a Kidderminster man’s year of fundraising is looking for people of all ages to take part.
Kris Griffin is taking on a year of fundraising in celebration of reaching his 10-year anniversary since being diagnosed with chronic myeloid leukaemia (CML). All proceeds raised will be donated to Leukaemia Care, a national charity based in Worcester who support anyone affected by a blood cancer diagnosis.
The canal walk has been organised by Kris’ wife, Kelly Griffin, and will start and end at the Anchor Inn Pub on the Diglis Docks, with walkers following the 10-mile scenic route towards Droitwich and back again.
Kris said, “What can be better than a brisk 10-mile walk around the waterways of Worcestershire on a Sunday afternoon? The money we are raising is going to save lives and I’m sure we’ll have a blast doing it.
“The support that we’ve received so far has been really encouraging but we need more walkers, so dust off those walking shoes and join us.”
So far, Kris has raised over £4,000 of his £10,000 target, and with the walk coinciding with September’s Blood Cancer Awareness Month, he hopes to get ever closer to his goal whilst raising awareness of leukaemia. For the past two years, the charity has marked Blood Cancer Awareness Month with a month long #SpotLeukaemia campaign to highlight the signs and symptoms of leukaemia.
The walk will take place on Sunday 23rd September at 11am. Anyone wishing to take part in the walk can request a sponsorship form from Leukaemia Care by calling 01905 755 977 or emailing fundraising@leukaemiacare.org.uk.
We’re a week in, only 51 weeks left to go! If you haven’t donated yet there’s plenty of time.
Nearly £900 of donations have come in, we’re approaching 10% of our target. I’m absolutely delighted and send my thanks and appreciation to everyone who has supported me so far.
Plans are coming together for a 10-mile walk on the 23rd September, the day after world CML day. We’ll start in Worcester and walk to Droitwich. As soon as we open sign-up, I’ll drop a message. Keep that date free!
Tickets are selling for the concert at the Cavern Club and we haven’t even announced any acts yet! More to come on that too. It’s on the 1st November and you can buy tickets now: http://bit.ly/CavernClubKris10.
The local media have been incredibly supportive, click the publication to open the story:
I’ve also been interviewed by my good friend Cavan Scott who is a number one best-selling author and comic writer for both adults and children. You can find the interview here: http://bit.ly/2o73ofl
If you can help me reach my £10,000 target through supporting any of the events, donating or getting involved, please contact me or visit www.justgiving.com/kris10.
To follow my story and to find out more about the fundraising, search online using the hashtag #Kris10.
I was diagnosed with Chronic Myeloid Leukaemia (CML) in 2008, aged 32, after visiting my GP with symptoms such as night sweats and pain in my hip. A blood test went on to reveal a leukaemia diagnosis which had me asking the question, “Am I going to die?”
When you’re told you have a leukaemia, or a blood cancer, or some other terrible disease, you never forget what being told feels like. There’s a ringing in the ears, everything just drains out of you. You just feel like you’ve been punched, really hard, but you feel no pain.
Now ten years on, I’m a marketing expert, blood cancer charity trustee and a passionate campaigner working with fellow leukaemia patients across the world seeking access to treatment. I’m also a seasoned public speaker, I recently spoke at a training day for 40 West Midlands GPs to help them understand what a blood cancer diagnosis feels like from a patient perspective.
The diagnosis made a huge difference to my life. Clearly, I could do without it, but it has made me a better person, I’ve no doubt about that. It’s made me recognise the important things in life.
To celebrate ten years since diagnosis, I’ve set myself a challenge to raise £10,000 for Leukaemia Care, the Worcestershire-based national charity that I’m a trustee of. I am also donating 10 days of my time to help support the charity, from marketing support to holding live webinars for anyone affected by a blood cancer diagnosis.
One of my key events in this year of fundraising will include a gig which is being held at the Cavern Club in Liverpool on 1st November 2018. As a huge Beatles fan, I was delighted when the Cavern Club gifted the space to hold the fundraising event. Other fundraising ideas include a 10-mile walk and donating my birthday to the charity in lieu of presents.
Nicole Scully, fundraising manager for Leukaemia Care said, “Kris is a fantastic example of somebody who is living well with a blood cancer. Kris is using his own strength to support others who sadly may not be living as well as he is. His fundraising pledge is a huge boost to the charity and will enable us to train more GPs about the signs and symptoms of blood cancer, support haematology nurses and continue to fund our support services for patients. We’re really excited to see how Kris’ year pans out.”
Tickets for my charity gig in Liverpool are now available through the Cavern Club website http://bit.ly/CavernClubKris10.
To follow my story and to find out more about the fundraising, search online using the hashtag #Kris10, follow Leukaemia Care on social media or visit the JustGiving page: www.justgiving.com/fundraising/kris10.
The 2017 patient survey from Leukaemia CARE is now live and they need your help to improve the experience of blood cancer patients!
In 2016, Leukaemia CARE partnered with Quality Health to develop the 2016 blood cancer patient experience survey. 2,519 patients shared their experience of blood cancer from diagnosis through to living with and beyond cancer.
This survey has helped to provide evidence to the extent of issues faced by blood cancer patients in the UK and inform the work at Leukaemia CARE. The leukaemia-specific findings and subsequent recommendations for improvements were highlighted in the ‘Living with Leukaemia’ report – those relating to diagnosis were used to inform the #SpotLeukaemia campaign for blood cancer awareness month.
This year Leukaemia CARE’s patient survey is running again from September through to Saturday 16th December and I want you to share your blood cancer experience.
The 2017 patient survey aims to:
1. Provide a deeper understanding of the issues faced by blood cancer patients, particularly those diagnosed with rare types of blood cancer.
2. Give a greater picture of regional differences between patient experiences.
3. Understand which patient experience issues are getting worse by comparing results to those from 2016 – this will then prioritise the focus of future campaigns.
With your help, Leukaemia CARE will have a greater understanding of the issues faced by blood cancer patients. This will help direct their future work and bring about changes where they are most needed.
Share your experience. Inform the work. Improve the future experience of blood cancer patients.
This September for Blood Cancer Awareness Month (BCAM), Leukaemia CARE are working to improve public understanding of leukaemia and raise awareness of the most common symptoms patients experience before they are diagnosed.
In the UK, 38% of leukaemia patients are diagnosed via emergency presentation, compared to a cancer average of 22%. The key focus is driving earlier diagnosis of leukaemia, to improve patient experience and save lives.
Leukaemia Care has developed a campaign called Spot Leukaemia which encourages people to learn about leukaemia and the common symptoms. Leukaemia can be hard to spot because the signs and symptoms are common to other unrelated illnesses. Knowing what to look out for could help you make the decision to visit your GP sooner.
Leukaemia Care has also been contacting GPs to inform them of the campaign, so that they are aware of Spot Leukaemia and the messaging, in case patients ask them about symptoms they are experiencing.
The campaign is designed with one thing in mind: Awareness.
To this end, can you help Leukaemia Care raise awareness for this campaign by reading and sharing the information on this page and signing up for the Thunderclap?
You may remember that I spoke at the inaugural All-Party Parliamentary Group (APPG) on Blood Cancer earlier in the year. I’m delighted to say that the first inquiry undertaken by the APPG, will look at all aspects of blood cancer, including awareness, diagnosis, patient experience, commissioning of services and clinical research.
The inquiry has a wide remit and will be summarising findings and recommendations in a report to be published later this year.
This report will provide an important overview of the blood cancer landscape and will raise a range of issues which the APPG will explore in more detail in the months and years ahead.
As part of this inquiry, the APPG will be holding oral evidence sessions and inviting written evidence from stakeholders including patients and carers. Submissions can be made via an online form, by email or through the post by 27th April.
Henry Smith MP, Chair of the All-Party Parliamentary Group on Blood Cancer said: “Blood cancer is the third biggest cancer killer in the UK, and the fifth most common cancer overall, yet awareness among the general public and policy audiences is still low. We need to make sure that NHS provision meets the needs of all cancer patients, especially in areas such as blood cancer where the patient journey differs from the majority of solid tumour cancers.
“We have a deliberately wide remit for this inquiry, the first of the APPG on Blood Cancer – this inquiry and subsequent report will provide a valuable overview of the blood cancer landscape, and I’m sure it will raise several issues that the APPG will want to explore in more detail in future inquiries.”
PLEASE engage with this process, I hope that the APPG will provide an incredibly powerful force in ensuring blood cancer patients are not forgotten about or left behind. It is imperative that patients support the process and the people behind it.
I don’t take any pleasure in having to follow-up letters that haven’t been replied to, especially letters about something so important. I also dislike having to copy senior people in to force a reply out of someone, it feels childish and wastes time.
But, I’m left with no other option. The letter speaks for itself and I’ve linked PDFs to the two letters that have gone unanswered. I hope that this provokes a dialogue that reassures patients about the generic process. Thanks, Kris
Dr Jonathan Fielden
Director of Specialised Commissioning – NHS England
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17th March 2017
Dear Dr Fielden,
RE: Imatinib – your reference JF 16-1201.1
Sorry to have to write again but it has been a month since I asked for a swift response to my letter dated 16th February 2017. I should also note that the reason I sent the letter in February is because I didn’t receive a reply to the letter dated 21st December 2016.
I am concerned by your lack of communication and so are the CML patients that I represent, numbering around 2,000. I have copied the Secretary of State for Health, the Chief Executive of NHS England and my local MP who I hope will encourage you into dialogue with me. I have attached my previous communication and if need be my local MP, Mark Garnier, will vouch for my credibility, he is aware of my advocacy and has been incredibly supportive over the years.
At a time when you are expecting blood cancer patients to make significant changes to their treatment, I am appalled by the lack of communication and care that has been shown. I hope that we can kick-start this relationship and give CML patients some reassurances that their questions and concerns are being taken seriously and explored. Given the amount of money that the switch to generics will save the NHS, it is surely the very least that can be done.
With stretched budgets, patient advocates and charities are under increasing pressure to fill gaps. I am proud to represent my fellow patients and I will not stand by and be done unto and I will not go away. We are a ground-breaking bunch of cancer survivors and I expect to be treated with the same amount of dignity and respect by NHS England that we are shown at all other touchpoints within the NHS.
I’m sure you appreciate how important it is for patients to have faith in the system, I look forward to answers in full for all my questions including this addition to my previous letter.
Some patients are reporting that consultants aren’t fully briefed on the switch. What measures have been put in place to ensure information has been disseminated and how is the data from new side-effects being monitored and centrally collated? Some patients are reporting new and different side-effects after switching.
The concerns I had in my previous letter still stand; the process that brought generic imatinib to market is flawed and this is now being realised. I hope that you can provide the reassurances that are needed.
Yours sincerely,
Kris Griffin (Mr)
078xxxxxxxx
CC: Secretary of State for Health, The Right Honourable Jeremy Hunt MP
CC: Chief Executive of NHS England, Simon Stevens
CC: MP for Wyre Forest, Mark Garnier
CC: CML-UK Facebook Group
CC: CML-Worldwide Facebook Group
CC: Access CML Drugs blog
I finished writing this blog post at some silly time in the early hours on the day after the conference. It was one of those jobs that simply needed to be done. I knew I wouldn’t be able to sleep if it wasn’t completed.
As it stands, I’m sat in a hotel waiting for a full-English, feeling like death. 4 hours sleep simply doesn’t agree with me and the hotel doesn’t do espresso!
After re-reading the piece it’s obvious I missed an incredibly important sentiment. Rather than sneakily jumping back in and editing seamlessly I want it to stand as it reads and bolt this on like an extra appendage.
The key to success for many of the projects we heard from yesterday depends on working collaboratively and sharing resources and funding. In a world that appears to be shrinking due to the cowardly fury of some sections of the population, it puts everything at risk. If we don’t work across borders, without restriction and we don’t pool finances to be better as one, then we risk everything. Everything.
Take the genome project for example. We know that the key lies in sharing and cooperation. Isolationism risks this. The Concordia research base is used and funded by countries across Europe and is part of the European Space Agency. Where does the future of Britain lie in these types of project? Worryingly, we don’t have answers and, even worse, the underlying sentiment from a Government without opposition appears to be that we’ll be just fine on our own.
Whilst we should be celebrating great minds we find ourselves worrying about the actions of the stupid ones. History tells us they can’t and won’t win but the stakes are high. When the world should be pulling together and giving us our Star Trek moment, it feels fractured and broken.
But, rather than shedding liberal tears, I’ll raise my middle finger to the situation and put a boot through it. It won’t stop me and it won’t stop the people in the room yesterday. Character IS destiny and I’ll raise a glass to the crazy ones. The ones that bring the world together through science. The ones that disrupt. The ones driven by compassion and love. The ones who believe in changing the world for the better. To the main event…
Cheers, Kris.
The #WIREDHealth conference is sold out again this year, so to be in a room with so many brilliant influencers, movers and shakers, I feel incredibly privileged.
But, why is a blood cancer patient at a conference widely regarded as a showcase for healthcare innovation, not necessarily medical breakthrough? Patient power means that we have to consider the bigger picture and when I attended two years ago and made contact with Oxford Nanopore it made me realise how isolated we can be.
One day, the MinION from Oxford Nanopore will allow blood cancer patients the opportunity to home test and send results to their consultant. A breakthrough for anyone who’s had a bone marrow biopsy. And take it from me, I’ve had 14 and this would be a welcome relief!
Today is all about looking at the health sector and seeing how we can apply technology and breakthrough advances to blood cancer. I’m incredibly grateful to Leukaemia Care, who I serve as a trustee, for funding my attendance and having the foresight to look at the bigger picture and for truly caring.
400 eager delegates packed the auditorium at 30 Euston Square in London to listen to speakers from across the planet. After the formalities from the incredible team at WIRED who put the conference together we moved straight to our first speaker: Peter Piot from the London School of Hygiene & Tropical Medicine. Peter spoke at length about the threat of epidemics, the reality of HIV and the danger of reliance on antiretrovirals. The messages were particularly hard-hitting, as they should be, and focused on better communications (especially on social) and ensuring funding is secured in this worrying isolationist time. In other words, if we don’t rebrand AIDS then we’re in danger of it getting out of control again.
Straight to Helmy Eltoukhy, the CEO of Guardant Health, to talk about cancer and genomes. The Guardant360 blood test ensures that cancer patients can be matched to specific therapies and in 2017 it is the fastest growing test for advanced cancer patients. It will also play a part in early detection. Their LUNAR test which is under $1,000, will test for five of the main cancer types (sadly not blood cancer at this point).
“Imagine fighting an infection without knowing the associated virus.” – Helmy Eltoukhy, the CEO of Guardant Health
The Chief Medical Officer for England, Professor Dame Sally Davies followed up on the topic of genomes and cancer and presented an incredible introduction to genomics. The UK is leading the world in genomics and it is proving to be the key to unlocking the deadly secrets of cancer. She spoke about the 100,000 genome project that 85 hospitals across the country are involved in, 1,500 NHS staff and 2,500 researchers and trainees from across the world. They are looking for faulty genes and the reasons they become faulty.
So, analysing a whole genome sequence will allow us to have that comprehensive view and give us the power to make decisions and diagnosis with a higher success rate. We were shown a case study where a partial sequence didn’t help, only the comprehensive approach provided the answers needed. The 100,000 genome sequence is patient focused and Dame Sally really believes that the one-size-fits-all approach DOESN’T work. Her approach is steeped in science-fact. What an inspiring talk, Dame Sally is to be applauded and supported for all she is doing.
(l-r) Kris Griffin and Waseem Qasim
Hot on her heels, Waseem Qasim from the Institute of Child Health. This conference was non-stop, amazing stuff! Waseem presented his work on engineered cell therapies, something that blood cancer patients may be aware of; it could be a considered a future treatment instead of a bone marrow transplant!
He’s involved in some incredible work on immunotherapy and the use of T-cells has been called a breakthrough in science (and leukaemia treatments) by publications and the industry alike. There’s lots of work to be done but this is an area we should be very aware of as we search for that elusive cure. In 2015 a high risk ALL patient aged 11 months was treated using a special therapy licence. UCART (UCART22 is an allogeneic engineered T-cellproduct candidate designed for the treatment of acute lymphoblastic leukaemia) cells were introduced to eliminate the leukaemia cells, these UCART cells were then deleted. 18 months on and the disease is undetectable. A formal phase-one trial is underway for children and adults with ALL. It’s an incredible breakthrough and the term molecular-scissors is one I feel could be a gateway to a brighter future.
Jurgi Camblong, the CEO from Sophia Genetics spoke about data-driven medicines and gave us an overview of collective intelligence through interconnectedness. This interconnectedness involves people and organisations working together all over the world. It was good to see privacy issues addressed but they continue to be the biggest obstacles. It seems, that we have no choice but to find a productive, safe solution. If we don’t, then we risk our future. Sophia has hit the 100,000 genome sequence target and they continue to build. We need more data because data means treatment becomes more successful. We’re back to patient power and personalised treatment once again. It’s a constant theme.
After a short break, we moved to section called ‘the data will see you now’ and to Jessica Mega representing Google’s medical arm, Verily. She spoke about collecting info, organising it and activating people to promote healthier lives. It was interesting to look at the advent of new, connected devices. Whilst we’re beginning to get comfortable with wearable devices, how about a spoon that detects a tremor or a phone that detects changes in voice and language patterns? We need to move from a system of individual productivity and IT silos to a system of collective intelligence and distributed computing. In other words, sharing is good. It’s that theme again. She talked about designing with the user in mind and ensuring that the patients get the tools and solutions that they need rather than the ones that they are given.
Straight on from Jessica, Jasmin Fisher from Microsoft Research Cambridge spoke about decoding cancer. She started by talking about cancer being a personalised disease. Some of her work includes modelling leukaemia cells so we are able to look at different states and make better predictions in order to reduce the effectiveness of the diseases. This means new biological insights, the ability to identify new therapies and help against resistance, which will all lead to better personalised treatments. This was an exciting blend of science and data.
WIRED have the ability to change gear very quickly and Marko Ahtisaari from Sync Project waxed lyrical about self-medicating with music! He took us through the scientific stimulation that listening to music gives us; the brain fires in different ways when we listen to different types of music. In several studies, music has had pain reducing effects. It’s hard not to be sceptical but in an era when music is so readily available and I know that I have playlists I put on to focus, inspire and cheer me up – then why not have a playlist that helps with pain. The work that Marko is doing starts to turn this into a science; the research he is doing into relaxation before sleep is particularly interesting and the Unwind.ai website is fascinating; please check it out on your mobile device.
Khaliya, a mental health strategist tried to push the envelope. Khaliya told a very personal story about her connection to the mental health agenda and the issues that come with it. Unfortunately, her scripted approach didn’t make it easy to connect with her. The concept of mental injury is an excellent one but when she spoke about the usage of psychedelic drugs on brain injuries, my scepticism kicked in. I was tempted to switch off but I’m glad that I didn’t. On reflection, this provocative section really challenged my thinking and Khaliya’s standing applause from some members of the audience really stopped me in my tracks.
Kris Famm from Galvani Bioelectronics ended the morning session with a focus on bioelectronic medicines. This felt like future-gazing at its very best. I don’t profess to understand this area at all but it’s clear that it could offer good outcomes for many diseases. The electric stimulation of a nerve (vagus) by an implant has had incredible effects in trials for rheumatoid arthritis. There was similar evidence for type two diabetes patients after nerve stimulation. It presents an incredible opportunity for a large number of future treatments and it’s a system that provides high efficacy, low side effects and broad access.
After lunch, we went straight into a section on the end of ageing which was curated by Dr Jack Kreindler.
The section started with Matt Eagles who has had Parkinson’s since the age of eight, 41 years. He’s a patient advocate and speaker and I applaud the conference organisers for including him on the agenda. He weaved an incredible life story around his use of implant technology (deep brain stimulation) and traditional treatment. Matt’s desire to stay young for as long as he can and his fight against a degenerative neurological disorder is one of courage and the love of life itself. Plenty of life-affirming moments from an inspiring individual.
Through to Daisy Robinton from Harvard University who provided an in-depth presentation about CRISPR, the Science magazine discovery of the year in 2015. She provided insights how we are using this to move forward with actual gene editing of humans. There is already a trial happening in China at the moment.
In the future will a visit to the doctor result in a referral to the gene surgeon? At childhood, will all children be screened and edited against diseases? Can this be abused to ensure a child has 20/20 vision or the attributes of a great sprinter? Ethically, it’s a challenging time but the opportunity to eradicate a number of diseases is too good to lose sight of.
Just when you are getting comfortable in your seat, WIRED pokes you in the ribs, we end the session with Elizabeth Parrish. She’s the CEO of BioViva Science and has undergone two rounds of gene therapy to reverse the symptoms of ageing. With photos of old people on the screens behind her, she spoke about the inevitability of ageing and clearly sees the consequence as the end of civilisation as we know it. She spoke about ageing as if it were a disease and treating the effects of it with gene therapy. This talk raised plenty of issues with me, mainly one of the ethics in experimenting on yourself but conversely isn’t this the ultimate in disruptive behaviour? The charismatic Parrish polarises the healthcare community and offers a useful insight of what could be.
It was refreshing to see Beth Healey from the European Space Agency to talk about life at the extreme. Concordia Research Station, which opened in 2005, is a French-Italian research facility that was built 3,233m above sea level at a location called Dome C on the Antarctic Plateau, Antarctica. Beth spent over 12 months at Concordia and spoke of days without the sun, sensory deprivation and living with, and on top of, a small crew. Beth was part of, and led on, a number of experiments and research during her stay including MRI, cognition, movement analysis and searching for extremophile bacteria. The preparation for manned deep space exploration is key but the knock-on effect for life on earth is equally important. It was a fascinating insight into this research platform and the work that goes on behind the scenes.
After another short break, David Halpern from the Behavioural Insights Team talks about disputing heath. I really enjoyed his analysis of the variety of outcomes that comes from behaviour in health. Using the basics of long waiting times, missed appointments and the over-prescription of antibiotics he provided some alternatives to current solutions based on behaviour. For example, if you tell the patient that a missed appointment costs the NHS £160, this has proved to reduce the amount of missed appointments – get the messaging right! By making high-calorie drinks a little harder to reach in a hospital canteen meant they reduced the amount sold whilst keeping sales stable because healthy drinks were purchased instead. He advocated that healthcare should go EAST when it comes to behaviour: Easy, Attractive, Social, Timely. An outstanding presentation, I immediately went to Amazon and purchased David’s book!
Eren Bali, from Carbon Health, followed up by looking at creating the world’s largest healthcare network, essentially redesigning the current model. It would be a technology platform that would connect hundreds of thousands of doctors. This is a system where you hold all of your own medical records, electronically.
I’m sold! In San Francisco, there are 100,000 patients already on the platform with 20 practices dealing with primary care, urgent care and specialist care. His virtual bot approach isn’t that different to the scripted NHS service we currently get on dialling 111. Using big data means that users of the platform can take advantage of a more personalised approach and much better outcomes. A brilliant approach!
The (Pricilla) Chan (Mark) Zuckerberg Initiative has £3bn to spend to eradicate all diseases, Jeremy Freeman joins us to tell us how. One of the issues with science and collating data is knowing what to do with the raw data; clearly getting results from raw data is key to making progress. How do we make ALL of the science more efficient, more effective and more collaborative? Their aim is to support basic science and technology that will make it possible to cure, prevent or manage all diseases by the end of the century. By combing technology and science, experts from both fields collaborating, means that this can become a possibility as the data will not become an obstacle. It’s hard not to fall in love with such a bold, brilliant idea and I’ll be following their work with great interest.
To continue unlocking the brain, Aldo Faisal from Imperial College London takes up the baton by capturing the perception-action loop. That is, over 80% of the movement of parts of the body that flow in and out of the brain. He created the human ethome database and can tell us, using science, what the two most important movements of the hand are; not the presumed answers of pincer grip and power grasp. This science means that we can provide better functioning robotic limbs. We were also shown fascinating videos about human augmentation using this new understanding of the brain. It was refreshing to see him advocate an approach that meant the science has to be married up by behaviour in order for things to work.
A hop, skip and jump across to exponential medicine with Daniel Kraft from Exponential Medicine. Ten years ago the first iPhone launched and look how far we’ve come. This fast-moving talk moved at the pace of recent technology advancements. The initial conclusion was based upon joining the dots.
Daniel ran us through how everything is connected, especially with the advent of 5G but how do we make sense of all this data? Sock’ables, sweat’ables, breath’ables, voice tracking that detects mental health, sensors in a baby’s nappy, urinalysis are all becoming part of our healthcare system. Will Facebook, Twitter, Amazon, Echo and things like the Apple Health Kit be the thing that binds it all? It’s clear that we need integration. More is going to happen in the next 10 years than in the last 100 and we need to boldly create together.
This year the content on the main stage was of such high quality I didn’t get to visit the start-up stage. But the winner this year, Give Vision, was given the opportunity at the end of the day to present on the main stage. Stan Karpenko did a superb job in telling us about his revolutionary electronic goggles that allow visually impaired to see again. It was a special moment to watch a video of a young boy given the device that enabled him to see properly again. Because, ultimately, that’s what we’re all in this for. To make a difference. To make things better.
The WIRED team hit the highs of two years ago when I last attended, and then smashed through them. The conference was provocative, inspirational and fundamentally important in equal measure. I tell colleagues that this conference puts you one step ahead of everyone else in the healthcare sector, it feels like the beating heart of innovation. From the perspective of a patient with a chronic illness it gives you hope. Hope in that there are LOTS of people who care and hope beyond the system. Because this is what disruption is all about and we’re a better society for it.
Thanks to Leukaemia Care who funded my attendance at this conference. Please visit their website and find out a little more about them.
(l-r) Kris Griffin, Greg Williams (Editor of WIRED), João Medeiros (curator of WIRED Heath)
After a short break, we moved to section called ‘the data will see you now’ and to Jessica Mega representing Google’s medical arm, 
Kris Famm from 
Through to 
The 
Access CML Drugs 